Tag Archives: Breast Cancer

I’ve never been on any sort of “diet” for this length of time. I’ve almost stopped missing food, but I miss meals something fierce. Humans are designed to break bread with each other, share sliced meats, divvy up the vegetables, refill the wine glasses, and make yummy noises together. I’m ruining the meal aesthetic with my liquid substitute in an oversize plastic cup. Drinking your dinner—unless that means wine accompanied by bits of cheese and crackers and sausages—just isn’t social. Frankly, it makes me feel like a jerk.

About 219 people have asked me why I’m doing this/torturing myself/dieting at all. At first, it was to slide the scale back for an upcoming oncology appointment. Now, it’s really about willpower. Can I eat only one meal a day for 30 days? Will I be able to navigate cocktail parties and (let’s be honest) chilly, dark school nights without a glass of Cabernet? Is a shameful, furtive, late night potato chip binge inevitable? This diet feels like a hair shirt, and the old Catholic sensibilities have kicked in. I’m starving and I’m offering it up. No lie.

I have cheated. A little. Teddy requested teeny, spiced cupcakes for his birthday (cream cheese frosting), there’s a HUGE candy bowl (Almond Joys and 3Musketeers!), and I’ve been to six different cocktail parties (an occasional glass of Prosecco). But my restraint has been LEGENDARY. I’m wildly hungry, headache-y, and occasionally dizzy. Brodie wants to know the difference between this powdery meal plan and an actual eating disorder. I have no good answer.

And now it’s Day 26. I’m lithe and slim and fabulous—that is, if those adjective also mean “look exactly like I did in October,” which is what my kids tell me. Either they are doltishly unobservant, or they’re right: I was actually fabulous then, and remain unchanged. However, my skinniest jeans fit right outta the dryer, which is how all women gauge their weight no matter what the scale says.

Happily, as I enter my fourth week as an ascetic, the scale has budged. But it’s probably not because these liquid meals are magic. It’s because I’m not drinking them. After the first few attempts, I just couldn’t gag down powdered milk mixed with water. I cannot. I will not. I refuse. I’d honestly rather starve, and have chosen this option. How anyone incorporates a whey protein “shake” into her daily life eludes me. Had I known I’d have to drink all of this reconstituted milk, I would never have signed up. First of all, I really do love food. But more importantly, I really really really hate milk.

Remember when President Bush declared, “I’m the leader of the free world and will never eat broccoli again,” or something like that, and then banned it from the White House kitchens? That’s me with milk. I can’t even watch you drink milk. The very idea of someone tipping the bowl to lap up, sweet, chunky, stagnant cereal milk makes me dry heave. And Teddy does it all of the time. I have to look away. It’s my bugaboo. And as Tony used to say when challenged about his limited palate and inability to eat food anyone else had touched, “I reserve the right to be irrational.”

To be honest, what feels really irrational right now is any sort of maintenance on this “system.” I did appreciate the two cleanse days avoiding all food and just drinking an ersatz Gatorade, effectively hydrating my cells and shrinking my stomach. An occasional fast? Redemptive suffering comes naturally (though never easily) for those of us who were raised in the Catholic tradition. But I’ll never swap a fake shake for a real meal ever, ever again.

Four more days, friends. Sauvignon blanc is chilling.

The fasting and near Lenten devotion to restraint and sober reflection on this “diet” has felt decidedly Catholic. When you learn this a small child, you never forget it. It’s also quite a soothing practice when you’re trying really really really hard to forget there are potato chips in the house.

Everyone hates a gal on a diet. It’s irritating to eat with someone who has “food issues.” We all have at least one sanctimoniously vegan, gluten-free, on-a-cleanse, allergic-to-everything, or even a I’ll-have-it-on-the-side sort of friend. We Lees are even impatient with picky eaters. We love to eat. The boys know that their fiscally responsibly father will eschew all frugality for food. We swoon for real, Japanese ramen, salivate over sushi, order the big steaks, and devour giant bowls of pasta covered with winy seafood broths. I’m a quick cook with some talent and dinnertime is peppered with yummy noises. But now, I’m not really… eating.

My forays into experimental attempts at healthfulness have been many: spin cycling, pro-biotics, Pure Barre, lap-swimming, and one post-baby, ill-advised Hot Pocket diet. Looking back through those entries, one theme prevails. I have no willpower. Also, I love Prosecco and I’m reluctant to give it up. When I posted my Day One essay wherein I poke fun at horrible powder cleanse diets (and myself for following one), I received responses ranging from “that’s stupid” to “why?” to “you don’t need to do this” to “it won’t work.” So, not really a wide range. The only, “You go, girl!” sentiments are from the ladies selling this stuff. Naturally.

But even those gals are critical of this gal on a diet. There’s a Facebook support page for hundreds enrolled in a 30-day challenge. When one member posted her bluntly honest opinion of the taste of these products, instead of commenting “Same,” I linked to my essay. Because, you know, same. They asked me to remove it.

I get that. But me, I’d rather sidle up to the gal who’s wisecracking one-liners– or the boy. Steve and I got through CANCER making fun of everything. Surely a diet can survive a bit of fun-poking. Though I’d be lying to say I didn’t sign up for this to get skinnier, I also have an oncology appointment looming on the calendar and if I keep dropping weight the way I have the past 9 days, we’ll get to skip the discussion of how I’m addicted to potato chips and drink on school nights.

Today is Day 9, friends. Yesterday I “cheated” with a hard-boiled egg white because I was seeing stars. Today, I’m housebound with crampy abdominal pain occasionally so severe, I wonder if I’m in labor with an Isogenix baby. But for whatever reason (probably the cancer appt), I’m resolved to see this through. Also, hungry. 21 days to go…

This makes me giggle. Also, if I told you how much the scale moved in the past 9 days, you might start considering this awful, awful regimen.

Nancy’s Point is a blog I’ve followed for years. Her summer challenge is a call to share. So I did. And if you’re so inclined (as a cancer veteran from the front or sidelines), please join in!

Share anything you want about your cancer diagnosis. Share your age, cancer type, stage, when you were diagnosed, family history (if any), your reaction, how you learned the news, or whatever you’re comfortable sharing.

I was 40. It was my first mammogram. They never said, “Hey, looks good! The radiologist will send the report in a few days.” In retrospect, I think I knew then. My husband, Bernie (a plastic surgeon who has treated over a thousand women like me) looked at my films before the radiologist ever called. I had a diagnosis of invasive cancer by the end of that week: stage 1, high grade, scary family history, but no damning genes. My maternal grandmother had had a radical mastectomy at my age; one of her sisters died from breast cancer before age 40. Mom and her twin sister always assumed it would be one of them. It wasn’t. It was me.

What is the most outrageous thing someone has said to you about your cancer?

Probably we’ve all gotten the “Well, at least you got a boob job out of this! Ha ha ha! I hate my boobs. I would LOVE to have them done! Amiright?” But maybe not many of us have gotten this from her own primary care doctor.

What is your biggest cancer pet peeve? I know it’s hard to choose, as there are many to pick from, right? But what irks you the most?

It’s the Facebook memes that drive me bonkers. The single heart emoji posted as a status IS AN AFFRONT TO ALL WOMEN WHO HAVE HAD BREAST CANCER. The latest one was a classic cut-and-paster message claiming that it was Breast Cancer Prevention Week, which was four months ago, and I’m not really sure is a thing. These often are accompanied by private messages to “feel your boobies” which is wildly insensitive when delivered to women who no longer have them. Otherwise lovely, supportive friends feel bullied to post these things and pass them along or… what… they don’t care about cancer? I wonder who starts these.

What is something you want others to know specifically about breast cancer?

First, another truth about those fucking memes: they can be a jarring reminder. Occasionally, we’ll have entirely cancer-free moments. Maybe we’re still in jammies and didn’t shower so haven’t revisited our scars; maybe we haven’t taken the Tamoxifen yet and are still doing the normal things normal people do, like yelling at children that the bus is coming or cutting crusts off of sandwiches. Then… WHAM. Your fucking heart emoji. Oh yeah, cancer. Thanks for the reminder. We live with it on our minds and bodies every single day and have all of October to endure. Unless that heart is a link to donating money toward metastatic disease research, it isn’t doing a single thing for us but providing a bit of posttraumatic stress.

Most people also do not realize that there is no “remission” for breast cancer, only NED (no evidence of disease). Asking us if we are “in remission” or “all good now” or if it’s “all over” forces us to lie to you, or get into uncomfortable discussions about how we’re secretly sure this is the thing that is going to kill us. I know what you mean when you sort of quietly ask, “How are you?” And when I say, “Fine, thank you so much,” we’re good. When you ask a breast cancer veteran if it’s “all over,” we assume you need it to be “over” and that really isn’t about us, at all.

If applicable, do you worry about recurrence rarely, from time to time or a lot? What is your biggest worry today, right now, this minute?

I worry about it all of the time, but in the past five years I’ve had only one, true freak-out that landed me in the scanner. I’m fine. I tell myself I’m fine. I remind myself of the statistics for Stage 1 and how grandma lived to 83 after her radical mastectomy and how long some of us are living with Stage 4 disease. But it’s the pink ribbon monster under the bed.

Do you feel cancer has made you a better person? Yes, I know this a loaded question.

It has made me a different person, for sure. I already assumed I was pretty awesome before The Diagnosis. I think I care about little things even less than I did before. Just last week a gaggle of teen boys had a wrestling match in my guest bedroom and ran the doorknob right through the drywall. And I thought, “It’s just a wall.” I honestly could not muster any feeling other than, “ugh, boys.” Sometimes I think cancer contributed to that kind of nonchalance about non-life-threatening things like holes in walls.

What is your favorite cancer book?

For sure, Hester Hill Schnipper’s After Breast Cancer. It was like food to me in the aftermath of chemo and surgery. I just kept reading and nodding. I still cannot believe how lucky I am that I could sit on her couch and bask in her wisdom during the scariest times.

Besides your family, where do you turn for emotional support?

All of you: the cancer veterans. The blogging strangers and friends from real life who have walked this road—I call us the Shitty Sorority– you ladies are a life line. But in the day to day, it’s Steve, my writing partner and testicular cancer veteran who I text with, “Can you believe these fucking memes are going around again?” And he gets it.

How many cancer blogs do you read and why do you read them?

I follow quite a few. Nancy’s has always spoken to me because she heralds science and refuses to give into the Cancer Made Me a Better Person trope. Terri Coutee is doing fabulous work with her diepcfoundation.org and her Facebook group that connects patients with each other and really fabulous microsurgeons. And like many of you, I bet, I still miss Lisa Bonchek Adams.

Do you call yourself an advocate? If so, what drives you?

You bet your ass I do. Just writing answers to these prompts is advocacy. Also, I will talk to ANYONE who is going through this. I was a surgical resident many moons ago, and my husband is a world expert in breast reconstruction. We know stuff. I’m happy to share information. Even more importantly, especially in the wee hours, I can text, “I’m here. I get it.”

Frequently this site gets a new visitor who is clicking on the old essays—the ones documenting the scary beginning and slog through a never-ending aftermath. Every week another bing on my phone asks me if I wouldn’t mind making a call, holding a hand, or answering questions for a friend. So I wrote a letter. This is to all of the Kates and Leighs and Laurens… and to Abby.

Dear Abby,

I heard. Or I guessed it from the cryptic posts and cried when your status confirmed the damning pathology. Telling people–saying it out loud– makes it more certain than the slides. I hope you had some Ativan for that.

Maybe it’s super early, maybe DCIS, maybe a quick lumpectomy and just-to-be-sure radiation will be curative. Maybe you’re exhausted from all of the tight smiling as people tell you how lucky you are– so lucky to be pushed out of the plane because there is a parachute that opens almost all of the time.

But maybe it’s not the lucky kind.

Maybe it’s the pink ribbon monster hiding under the bed. White-coated well-meaners tell you with practiced concern that it’s not curable but it’s still treatable. Maybe they can tame and starve it for years, turning it into a defeated Voldemort sort of cancer. Maybe they’ll optimistically cite future graduations and weddings and vacations and plans like you’re thinking about a time-share in Orlando right now. As if it didn’t take seven books and umpteen tragedies to turn Voldemort into a fetal worm. As if any of this can have a happy ending.

Maybe it was there all along. Maybe it just came back (why does it fucking come back?). Maybe surgery was years ago and your hair is amazing now but there is still this little hidden part of you that only the other Shitty Sorority members see. Maybe you fucking knew it would come back but didn’t tell anyone because the “lucky” people would whisper that you weren’t being “positive.” Maybe you are scared shitless and praying nonstop or for the first time in your life.

Maybe God is listening and sending warm assurances—not that it’ll be okay, exactly, but that He is there. Maybe it feels like God isn’t listening, or doesn’t bother with things like unrestrained mitosis. Maybe it was just too much begging for impossible things. Maybe prayer doesn’t work like that, or for you, or with any sort of speed… or at all.

Maybe. One thing is certain: no one knows anything. Here’s another: you’re not alone.

Probably you are reading everything you can: the cancer sites, the scary statistics, and the stories of a hundred breastless women, gauging the level of your unluckiness against blogging strangers. Probably one of them is like you. Look, she’s totally like you! Probably you’d be fast friends even if you never spoke a single word to each other. Probably.

No, definitely. Definitely that.

There’s no pledge period for the Shittiest Sorority. Sisterhood is immediate. I have yet to chat up a head-scarfed stranger without finding something to laugh or cry about. Usually both. Our hidden parts–our secret cancer selves–we save each other seats in the bleachers. We’ll watch this peculiar sport of losses and triumphs together. Come sit next to me. I brought snacks.

We have cheerleaders, too. It’s different, but they are absolutely vital. Their pom pom positivity, casserole-toting enthusiasm for health and healing, all that marching in your name for cures– it’s wonderful and adorable. Their cheers are prayers, and their prayers are medicine. They fill in for us when we don’t have the Go! Fight! Win! spunkiness people love to witness in the cancer-ed. But you and me, we know cheerleading is for the healthy. And their prayers are purer than ours with all of the distracted, terror-stricken pleading. Let them pray. Maybe it works. Probably?

I see you, Abby. I’m waving you over here. (I’m still here.) Come sit with me on the bleachers. Get under my blanket. You don’t have to do the wave or cheer the fight song. We’ll just see how this plays out. Together. With snacks. And Ativan. You are not alone.

Five years ago, when I knew I’d be losing my hair anyway, Bernie advised me to chop it all off in advance. Getting used to short hair was prudent preparation, and honestly, the thought of long, blonde clumps circling the drain was more than I could handle. Katherine booked an appointment for me at a fancy salon. I still have no idea how she convinced them to squeeze me in, just two days before Christmas. Well, I guess I do. It’s very Katherine to chase down Boston’s most famous hairstylist in Beacon Hill to insist on a favor for a friend. Appointment secured, April came to fetch me, and we drove into the city on a dark, snowy afternoon.

That night in the fancy salon was blurry. I chose an edgy, short hairstyle out of a magazine. I was terrified I would start sobbing. Suddenly, there was someone who didn’t look like me in the mirror. I don’t remember paying (thanks, guys). April and I returned to the car, and it wasn’t there. We navigated slushy streets in the wrong shoes to find an ATM and then a cab to the sketchiest parts of a city where cars are towed. We paid the scary man, found the car, and shared nervous could-it-get-worse?? giggles the entire way home.

A month later, a few days before surgery was scheduled, my short haircut was getting shaggy. But I wasn’t going to return to the fancy salon on Newbury Street for a trim. It was time to come clean with Clyde.

Clyde had been my go-to guy for a quick cut and color since 2007. Back then, I was a walk-in to his studio as an exhausted, frumpy-feeling mom of tiny boys. I needed to mask the gray and just wanted to feel pretty, dammit. Clyde promised me this would be easy, as I was already pretty (and now I already loved Clyde) and he also assured me fabulous hair for small money in a short time. We were fast friends and I’ve been a regular at Clyde’s station for a decade.

A typical exchange with Sandy, the front desk receptionist:

“Hey, it’s Britt… can I get in with Clyde, like, TODAY?”

“Hold on babe…. yep. When?”

“1 o’clock?”

“You got it.”

“Really?”

“You know he’ll squeeze you in whenever you want, doll.”

My girly readers will attest there can be quite a bond between a gal and her hairdresser. Geez, there are entire movies centered on conversations in swivel chairs and over contoured sinks. Though I will watch Steel Magnolias every time it is on and love the idea of being a regular at Truvy’s, Clyde is a true departure from any stereotype you have of a hairdresser. Picture an extra from The Sopranos: slicked back, black hair (when he had it), sleeve tattoos, and a Harley. Clyde is Andrew Dice Clay in a beauty parlor.

After umpteen hours in his chair–over most of the years of my marriage– Clyde could quote my mother-in-law and recite the list of all of the extra Asians we’ve housed over the years. He even talked Shmo out of pink hair when he knew she was applying for jobs. Clyde and I shared similar taste in binge-worthy television programming and agreed that kids should never be forced to eat broccoli but should be dragged to Church regularly. We covered all of the topics.

After too many months without seeing Clyde, I booked my appointment, showed up with hair he hadn’t cut, and confessed.

“I cheated on you.”

“Sit down. What’s going on?”

That’s when I told him I had cancer. He understood entirely how I couldn’t ask him to lop off the hair he’d been perfecting for years. I knew he’d be too sad for me. And if Clyde was choked up, I’d start sobbing, and I only had so much Ativan, and that’s how close we are with the dear ones we choose to tend to our hair. It’s an oddly intimate relationship some of us have to the talented folk who know us well enough to forbid bangs.

Last night Sandy called me at home. Clyde is gone. A brain aneurysm means I will never see Clyde again. He was only 48.

I’m sad. I’m praying. I’ve been writing since midnight.

I have an irrational (?) need for his closest family and friends to know I loved him, too. Likely there are so many of us who have relied on him for years, have marveled at his talent and speed, and loved him, too. Clyde has been on the sidelines of my silly life—making me feel prettier when I felt invisible, literally shaping my recovery, and always telling me I was a cutie.

Clyde is gone, but I take solace knowing Clyde knew I thought he was fucking amazing. I hugged him hard, tipped him hugely, and only ever cheated on him with a fancy salon once. I told anyone who asked that no one was better at color than Clyde. Six years ago, I even yelped it, earning him a shout out from the corporate office.

“Do you really think I’m actually that awesome? I mean, no one has ever written a review like that for me.”

Sitting at a cute café in Brookline this morning, sipping my chai latte and waiting for the rest of the committee to arrive, I thought, “In the New Year, I resolve to be on fewer committees.” A minute later my phone reminded me that today is the 19th, and our committee meeting is on the 20th. So although I have an extra shopping day (yay!), I still have another committee meeting tomorrow morning (boo).

For someone who doesn’t “work,” I have seven different committee meetings on the calendar just in December. If I count all of the Boards and focus groups and nominating and discerning and development committees, there are 11 different tables I’m scheduled to appear, drink the coffee, offer my input, take the minutes, and probably plan something. And I’m definitely forgetting a few. Why am I on umpteen committees? I’m going to figure it out in the New Year.

There are upsides to being a Committee Girl, and the first is that most of these groups include people I adore, lots of giggling happens, often there are baked goods, and Important Things are accomplished. If you know me even the teeniest bit, you know I’m a cheerleader for Steps to Success which supports and champions kids who live in public housing in Brookline. Most people think Brookline is flush with millionaires, and they’re not wrong. Tom and Gisele live here. But 13% of our neighbors are living in poverty, and until that number is zero, I’m going to keep talking about Steps to Success. Steps to Success. Steps to Success. Steps to Success. Get your checks in the mail.

I’ve also urged the local lot of you to Shop for Jesus, also known as the Christmas Market at the Church of the Redeemer. Since 2008, we’ve raised and given away a half million dollars to Boston’s “unhoused,” food pantries, St. Stephens Church, and oodles of other worthy organizations. So if you came and bought a sweater or some chocolates or commissioned Pete to draw your house or dog, you “gave,” too. Thank you. Thank you. Thank you.

Though the work is rewarding and the people are wonderful, when staring at a calendar riddled with meetings, even the most chipper committee girl begins to wonder if someone else could take her place at some of these tables. Recently, I met one. Though we’d been friends-of-friends on Facebook, in person this was a seriously gorgeous gal. I mean, she is totally television pretty having been, you know, on television. She was all cute and tiny after giving birth, like, a minute ago. And with her handsome doctor doting husband sitting by her side, she admitted she wasn’t returning to work in the media, but was looking for a meaningful volunteer job once the kid got a little bigger.

This girl is low hanging fruit, thought Chipper Committee Girl. I braced myself to assail this unsuspecting beauty with poverty factoids and inspire her to devote her time and checkbook to my causes. Already I fantasized tapping into her media savvy and got excited about the possibility of having someone without an AARP card on my development committee.

I want to do something with animals. Pretty soon we’re getting a pig.

A snort might have actually been expected from me, because I am a terrible person. But after watching her delight talking about animals and her husband’s bemused acquiescence to the certainty of imminent pig ownership, Chipper Committee Girl crumpled up her pitch and vowed to stop trying to recruit everyone. Certainly the animals need their champions, too. And although cats make me sneezy, doggie poop bags make me dry heave, and anything in a tank doesn’t belong indoors, even I have to admit those teacup pigs are irresistible. I’m kind of looking forward to seeing them on Facebook already.

The second upside to being Crazy Committee Girl is, occasionally, a welcome distraction. A creepy and actually not so very nice elementary school teacher often said, “an idle mind is the devil’s workshop.” Ten year old me would picture a tiny horned dude in a red suit engaged in odd carpentry inside my lazy, lazy head. And if I go back to posts from five years ago, I can read the dark thoughts of an idle mind trapped indoors and awash with cancer fighting poisons. This year, I was too busy with meetings to wallow in Cancer-versary memories. But it’s been five years, y’all. I should probably plan a party. Who wants to be on Britt’s Party Planning Committee? We’ll only meet once. And there will be cocktails.

Merry Christmas, friends! And may the New Year find you only on committees whose work blows your hair back… or makes you more excited than a kid on Christmas morning (who just got a teacup pig). Snort snort.

Hey. Hiya. Britt and Steve here. She had breast cancer. He had testicular cancer. And we’d just like to say: STOP THIS:

“Every person has 1000 wishes. A cancer patient only has one wish, to get better. I know that 97% of Facebookers won’t post this as their status, but 3% will. In honor of someone who died, or is fighting cancer – post this for at least one hour….”

Steve:

Seriously. What are you doing? Facebook is where you’re going to take your Stand Against Cancer? And you’re going to do it by posting this trite, ineffective and simplistic post– for one hour?

This is another doozy:

“I deleted a lot of people recently and continue to do so based upon behavior and content! Now I’m watching the one who will have the time to read this post until the end. This is a little test, just to see who reads and who shares without reading! If you have read everything, select “like” and then copy and paste this text on your profile. I know that 97% of you won’t share this, but my friends will be the 3% that do. In honor of someone who died, or is fighting cancer or even had cancer, copy and paste. October is Breast Cancer Awareness Month!”

So, you’re deleting friends if they don’t live up to your reposting challenge? Facebook doesn’t work that way. Not everyone sees everything you’ve posted. It has an algorithm that determines… oh, fuck it. YOU’RE KILLING OFF YOUR FACEBOOK FRIENDS IN THE NAME OF CANCER AND YOU DON’T SEE THE IRONY.

Britt:

When I read these posts I want to comment, “I have 1000 wishes, and 999 of them are that you’d stop re-posting this” or “If you truly cared about cancer, you’d employ a colon properly and stop misusing exclamation points.” But I don’t. Once I typed, “This just made my cancer just come back” but immediately deleted it, fearing certain backlash, or scaring my parents. BUT IT WOULD BE SO FUN TO TYPE THAT.

Nearly four years ago I poked fun at one of these copy-and-paste Facebook Calls to Care on my cousin’s page. Because he is probably the nicest boy on the planet, and we don’t share oodles of social media contacts, it seemed a safe place to have a small conversation about it. He admitted that 1. He does, actually, care about cancer, 2. He had no idea these sorts of things were already clogging the interspaces, and 3. He felt a little pressure to repost, frankly. Still, I felt kind of shitty about not just letting it go.

Which is crazy! Why should I, a person who actually had cancer, feel guilty about mocking memes that not only trivialize that experience, but also trigger its memory?

Steve:

“Guys, we’re just trying to raise awareness.” Good. But you’ve got to know that Britt and I are at Maximum Awareness. We’re at 11. Wanna help? Raise money. Raise a whole lot of money. Give it to programs that treat people with cancer, or better yet, give an unrestricted donation to a hospital that treats all crap diseases. Cancer gets enough PR without your one-hour post, but there’s a lot of other shit that can kill us and it needs research.

Look, I get it. Cancer makes everyone feel helpless. Maybe there is something you can do. So you pray. You go on a walk to raise money. You share your cancer-ed friend’s blog (thanks, guys). These are helpful, kind and loving ways to respond. But, as your formerly cancer-ed Facebook friends, we have to tell you: these memes are mean.

Delete old acquaintances. Thin the herd, by all means. We’re there with you. Why did we agree to “friend” that person we met that one time at… where was it? Crap. Chemo brain. Anyway, delete away. Just don’t do it IN THE NAME OF CANCER.

Britt:

Last weekend another re-posted meme splashed across my feeds in honor of Cancer Survivor Day. You know when Cancer Survivor Day is? It’s in fucking June. But since no one knows that, it is assumed that TODAY is Cancer Survivor Day and then every day becomes Cancer Survivor Day. And the irony is that every day for us is Cancer Survivor Day. But thanks for the re-post reminding me you feel exactly one teary emoticon and heart about it.

IT WAS SO FUN TO TYPE THAT.

Steve:

Here’s the big problem with these memes: they’re demeaning. The “lost their battle with cancer” language makes us victims. No one is losing a battle. Does a stabbing victim lose a battle with a knife? No. People die of cancer. And we didn’t “win.” We’re in remission (for now). We were treated in a room full of people, and many of them died. The language of “battles” suggests if we won, they lost. Don’t do that to us.

Also: I felt nothing “heroic” about being an adult and having cancer or getting chemo, surgery and radiation. I was not “brave.” I was scared. The heroes are the doctors and nurses and researchers. They dedicate their lives to saving others. They work in the middle of the night, trading time with their own families to clean up our puke. We sit in a chair and get poisons slowly pushed into our blood, because there is no choice. They come to work every day knowing they will meet lots of great, kind and caring people who will die. That’s brave and heroic.

Britt:

It wasn’t “heroic” of you to submit to testicular cancer treatment, Stevie. But your writing about it—well, there’s bravery and mask-and-cape stuff in that. And I agree with you about our caregivers. I can’t gush about Maria enough.

Is this too mean, though? I feel like we’re being a bit nasty. And then Darla from accounting posts, “My boobs got me out of a speeding ticket” and I want to rip out all of my new hair.

You know I’m going to need to wrap this up with a pretty bow, right? How do we land on a we-know-you-care note?

Steve:

Do we sound angry? Well, we are. We are angry that this despicable disease upended our lives. We are angry that it required amputating deeply intimate parts of our bodies. We are angry that our kids had to live through it and ask, “Are you going to die?”

And we are angry that all of that gets reduced to a CTRL-C, CTRL-V on Facebook.

But we’re not angry at you. We love you. You want to do the right thing. Perhaps someone you love has or died from cancer. Maybe you’re also a little irritated that a circulating status update is suggesting you don’t care because you won’t surrender your page for an hour of poorly constructed drivel. You don’t have to. You can donate to a charity, volunteer at the chemo ward… or just ask, “Is there anything I can do?”

That’s what helps people with cancer.

Britt:

Good advice. Loving. Pithy. True. I once compiled 10 awesome “posts” uttered in real life or typed in messages. They still mean the world to me. And honestly I feel better for having exorcized those feelings– maybe enough to delete my Cancer meme-trolling fake Facebook account. (No, I totally don’t have one of those. No, that would be mean. Nope.)

If you’ve read this far and aren’t still totally insulted by him, Steve is doing his second annual Movember Foundation fundraiser. He grows a mustache, you donate to help men with testicular and prostate cancer, as well as depression. Donate here!

Spoiler alert: I’m totally fine. And only a few days of “awareness” to go…

The left side is bigger than the right. There’s definitely a lumpish sort of thing. It’s not huge, but it’s different. And it wasn’t there yesterday. Or was it? Was it there yesterday? Is it new? Is this it? Or am I being insane? I’m insane. This is nothing. Or maybe it isn’t. I’m fine. I’m dying. I’m scared. I’m praying.

“Strength. Guidance. Love.” He said.

So, I’m fine? Fuck, why do I need strength? Where is the guidance coming from? I’m emailing the oncologist.

“Hi there. After four years, are patients allowed one freebie freak out? I have a lump on my rib. It was probably there all along and I’m being crazy. Except here I am emailing. Can I come see you? Or tell me to call the office and make an appointment like a sane person.”

“I’ll see you today. Noon. You’re not crazy.”

My breast surgeon called that night. I’ll see you tomorrow, she said. Even though we could wait and no one is worried, I’ll see you tomorrow, she said.

And so I went. This seems normal, probably there all along, she said. But let’s do an MRI because it’s time to do an MRI, she said. And maybe I should see you more often, she said. Your cancer was high grade and you are still young, she said.

Risk. Probability. Recurrence. Tamoxifen for 7 more years. Maybe forever. More tests were ordered.

And I waited, feeling the weight of both possibilities… my body a Schrödinger Box of Cancer.

* * *

He injects me with nucleotide and says to return in three hours. I get back in the car to return to two pajammied boys glued to their monitors. It’s an unexpected snow day, and I hadn’t told them I’d need to be in and out of the hospital. Brodie is suspicious. Teddy wants pretzels. It’s time to go back. Humming “Radioactive” I brave the slippery roads back to the hospital. The huge machine scans me for hot spots that mean I’m dying. Bernie texts me a few hours later: it’s negative. I might be a little nutty, but I’m not dying. Not right now, anyway.

A week later, I’m back in the scanner. This time, a MRI of my chest. The lovely staff reminds me it will be identical to the test four years prior. I took too many milligrams of Ativan before all tests four years ago, so I have no recollection of the previous MRI. They’re nice about this. You have two boys? I have two boys! Weather! Crazy. Spring Break? Oh, we love it there. Sure, I’ll dangle my implants into those freezing slots. Bernie texts me a few hours later: it’s negative. I can stop feeling crazy because I’m not dying. Not right now, anyway.

* * *

This is the occasional paranoia of your formerly, maybe currently, but-always-checking, cancer-ed friend. Remission isn’t a word breast cancer allows. Why the Year Four Freak Out? Maybe I was thinking about Lisa Bonchek Adams, or Tricia, or Susan, or Tara, or Kathy… or maybe any palpable lump will always herald the beginning of the end. Go ahead and queue a could-get-hit-by-a-bus-tomorrow argument. We’ll listen politely. But anyone who has watched a loved one die from cancer might prefer the bus.

I’m sure I was distracted, forgetful, lazy, and uncharacteristically impatient during the Schrödinger moments of those two weeks. Not wanting to unnecessarily scare my loved ones, I kept it close to my lumpy chest.

“Strength. Guidance. Love.” He said.

Check. Check. Check. Not a single person—most importantly, my beloved Bernie—accused me of being paranoid or silly. Instead, they rallied with strong support, quick tests, and grateful “phew!” messages.

I opened the box and killed the cat that was never Cancer… but fear. For now, anyway.

Picture the fictitious cancer patient. Skinny. Gaunt. Wasted muscle clinging to pencil thin bones. Weak. They have lost a ton of weight from the combination of no appetite coupled with vomiting up what they have managed to get down. It’s the World’s Worst Diet. Everyone loses weight on it.

This wasn’t me.

I finished chemotherapy a year ago weighing one pound more than when I started. Today, I weigh 25 pounds more.

What the fuck?

So here’s the nasty trick chemo played on me. The treatment and never-ending recovery has added a lot of weight, and it continues. And, mind you, I take ownership for much of this. I did not go into treatment nice and svelte. Britt has called me “…a teddy bear… a grumpy Jewish teddy bear,” and you don’t get that moniker weighing 145 lbs.

The oncologists suggested eating 2000-3000 calories a day during the course of my chemotherapy regimen. They didn’t tell me how to pack in a 4th or 5th meal a day, but insisted I needed extra calories to fight cancer and stave off nausea. When they didn’t specify any specific source for these calories I thought, “Awesome! Ice cream at every meal!”

Except, I found out, eating was a horror. You know how you feel at 3pm if you’ve skipped lunch? Imagine that but with a sour stomach, achy bones, bitter fatigue, and a sandpaper tongue. I had nightmares where I actually screamed, “I can’t eat again!”

So there I was, lying in bed, immobile, eating 3,000 calories a day. It’s amazing I only put on one pound. Chemotherapy treatment ended. Eating habits returned to normal. Bald and exhausted, it was now time to start an exercise regimen. But my body had other plans…

For the uninitiated, neuropathy is extreme nerve pain. Imagine “pins and needles,” except the pins are on fire and the needles are sticking you a thousand times a second, all over, from the inside. Neuropathy is a common, though under-discussed side effect of chemo. About one in three of us get it. For me, it is exacerbated by heat. I keep my apartment at a temperature approaching the crisper drawer.

So here I am, post-treatment with one no-advancement-of-disease scan under my over-stretched belt, actually wanting to move. I want to return to some sort of daily routine that involves logging steps outside the apartment. But doing so activates my neuropathy. The pain is awful in a way that awful is just not nearly strong enough a word. I’ve tried meds. I’ve been to acupuncture. (A funny irony. The cure for Hell’s “pins and needles” is more pins.) These treatments stave off an attack temporarily, but a short sprint to catch the cab or extra flight of stairs is enough to warm my body for another attack.

All of which means I’m terribly out of shape, gaining weight, and damn near immobile at times. Helplessness settles in: if I can’t lose weight getting cancer, what chance does Weight Watchers stand?

I can eat less, or better, I suppose. Who couldn’t? I’m determined to fight through the pain. I’m starting physical therapy with people who specialize in neuropathy. I take cold showers after exercising (which helps) and text Britt that this sucks (also helpful).

I’ve written before about how when cancer treatment ends, you’re really only smack in the middle of it. “If you think cancer’s bad, wait until you’re cured,” I’ve noted. The PTSD. The side-effects. The constant follow-up appointments. The time spent in giant scanning tubes and machines that make loud noises. The four days after each scan wondering “Has it come back?” The cancer goes away, but the “cancer patient” remains.

Recovery for me still includes lasting effects. It also, unfortunately, includes an occasional jokey barb about my increasing teddy bearish-ness. Prior to cancer, those comments might not have weighed as heavily on me as these extra pounds. But I got cancer and got fat. Beat the first. Working on the second. Stay tuned.

Editor’s note:

I will continue to remind Steve that a recent study of breast cancer patients found an average 11-pound weight gain for women who had chemo versus those who did not. The toll these poisons take on our metabolism is still undefined, but certainly reported anecdotally and with great humor and frustration in thousands of breast cancer blogs. Hang with us, Stevie. We think you’re doing great.

Before I became a pledge in The Shittiest Sorority, the Pepto Bismol dipped month of October didn’t make much of an impression on me. Plus, pink is the principal color in my closet, so I was happy to buy an umbrella or vacuum cleaner in rosy hues. But for those who have spent a year (or lifetime for metsters) preoccupied with mutilating surgery and poisons, wigs and neuropathies, PTSD and depression, that pink ribbon-emblazoned hosiery egg becomes irritating and dismissive. Control Top for the Cure in nude and suntan!

Pinked-up products are like that girl in high school who does a happy, drunken jig to The Love Cats, but cannot name a single song on any of the B sides. She likes The Cure because The Love Cats is upbeat and silly and ba dum dum dum dum dum BAH da da da da da! The peppy cheerleader doesn’t know The Cure, though. Don’t pretend to understand the tortured genius that is Robert Smith. That’s what we’re like in October. We’re eye-rolling goth girls and YOU DON’T GET IT. We’re barely tolerating your cheery enthusiasm and goofball Facebook status jokes (“no TP, goodbye socks” isn’t saving lives, y’all.) The #FuckCancer slogan, though– that one we can wave a foam finger for.

This month, my favorite gals in the blogging world are posting under a common theme: #BreastCancerRealityCheck. This hashtag is our clubhouse—a place to vent about the realities of breast cancer treatment as our social media feeds fill with well meaning, but miss-the-mark slogans and fundraisers or complete inanity (Save the Ta-tas, No Bra Day). A brief scroll through these tweets will immediately acquaint the un-cancered with the uglier side of the disease, and explain why your friend who you assumed was “cured” gets a bit bitchy in October.

Bernie, who is sometimes nicer than I am, says people should not be criticized for good intentions. I will never Walk for the Cure—I’ve given quite enough, thank you. Plus, cardio, so yuck. But today, both of my kids did that… for me. I think. I’m not sure. Teddy chose crossing the Smoot Bridge over the first performance with his choir. Brodie skipped the second tryout for travel basketball in favor walking all over Boston in the rain. Maybe they just wanted to ditch Church to hatch Pokémon eggs downtown. I’ll never know. But last night, their bedroom looked like this:

and I gave them the benefit of the doubt. The only other time they have laid out clothes in anticipation of an event, we were going to watch the Red Sox in the World Series.

Thing is, Bernie and I can never underestimate how Breast Cancer has affected our boys. For nearly 5 years, they have been the kids at school whose Mom Had Cancer. It certainly doesn’t define them. But when other moms join The Shittiest Sorority, mine naturally become the go-to pals for information, possibly support. Two years ago, Teddy told me that a school friend’s mom “… has breast cancer, and probably is going to die.” Ooof. I reached out to her not only to offer help and a sympathetic ear, but also to be able to change that narrative for my own kid.

The boys understand that Breast Cancer Awareness is unnecessary—everyone is aware. They know there is no remission, that there is no cure, and also that many moms don’t die (but that some do). Why did they want to do the Breast Cancer Walk today? Not sure. Last night Bernie and I watched Deadpool, and I cannot stop thinking about this quote:

“The worst part about cancer isn’t what it does to you, but what it does to everyone else in your life.”

Some of these Pink Things aren’t really about us, at all. Instead, they give the people who love us an opportunity to do… something. If that something raises even the teensiest bit of money for metastatic disease research, that’s even better. At year five I feel less back-lashy about the Pinking of October, possibly because I know I have my sisters at #BreastCancerRealityCheck who will virtually high five my snarky aggravation with pink urinal cakes, Dill Pickles for the Cure, or silly slogans about boobies that insult the very people who no longer have them. (So, maybe still a bit back-lashy.)

But to all who gathered together in the rain to walk the city in support of people like me: THANK YOU. Thank you for raising money and caring and being silly and wonderful. This is what my boys need to see in the world: a bit of pink-drenched proof of generosity, encouragement, and love. And to my Shitty Sorority Sisters, hang in there. Only 29 more days…

Come on in and browse. The biscuits were made fresh this morning, the Slush Puppie machine was just refilled with a new bottle of red syrup, and we have the biggest selection of bait this close to town.